Recent shortness of breath

[CMNK12]

Hello, this is my first post on SJS WORLD but I have been reading here for quite a while. I have had sjs dx by lip bx since 2005. MY ssa and ssb are always negative. I was originally ruled out for MS as many of you were also. Recently my latest and greatest symptom is shortness of breathe with exertion. I have tried Nexium and prevacid to rule out gerd or esophasitis...it persists. My precious family md has ruled out pnuemonia given me antibiotics,hycodan,and ventolin. I am now waiting on my pulmonary consult .( this all started last of april and has slowly gotten worse)
    I feel like a hypochondriac at times. People look at me like Im crazy. When I am still or resting most of the time I am fine. The shortness of breathe comes with exertion and it is minmal exertion. I cough and cough if I don't stop and rest. Sometimes that doesn't even do it. When I cough and cough it is so irritating then I become hoarse .After all that I may cough something up. Sorry. The ventolin inhaler helps some but I have to use it pretty much every 4 hours.
   I guess I am just hoping for similar stories or reassurance .My pulmonary appt is still a month away. Thanks for listening.

[mshistory]

I have persistent shortness of breath, coughing upon exertion and often with a deep breath but all of my tests were normal. Nothing really helps. I hope you have good results at your pulmonology appointment!

[irish]

Welcome to this site. Lots of good info here and friends willing to listen and help.

I would advise you to use the "search" option on this site and use phrases such as sjogrens lung involvement---or sjogrens pulmonary symptoms, etc. We have a lot of people on here who are developing lung issues and the doctors have slowly been catching on that sjogrens causes lung issues that can be quite serious and need to be treated early on.

Do not let your pulmonary or any other doctor tell you it is asthma. Just because it walks like a duck doesn't mean it is a duck when it comes to autoimmune diseases. The lungs secrete mucus and get inflammatory responses related to the autoimmune diseases. This can damage the lung tissues.

If you don't get a doc who listens and pays attention to these issues then run don't walk to the next nearest lung specialist. The heavy duty drugs often need to be used or a different drug may need to be used. Not only that, but it could be some other issue that is not related to sjogrens but still serious.

Sass on our site has had a lot of lung issues and really had to do some heavy duty doctoring to get an answer. She will soon be starting chemo for her lung issues. Chemo is a fancy name for some of these drugs that help curb the autoimmune disease. Some of them are used in the treatment of cancer only in higher dosages.

Also, be aware that not all of us get the lung issues and those of us who do don't always develop the very serious symptoms.It is sort of a crap shoot when it comes to autoimmune disease. The important thing is to not be put off by doctors so that (if you do have the sjogrens lungs) you don't get the treatment needed early on in the disease process. Do not panic, just persevere.

Hang in there and eventually you will get an answer. Do a lot of research and educate yourself well so that you can interact better with the doctors. Good luck. Irish

[KarenR]

I too have had problems with shortness of breath with mild exertion. About 2 years ago I developed a heart murmur. My neuromuscular guy ordered an echocardiogram and it turned out I have a dynamic heart with left ventricular outlet obstruction. That's when I added a cardiologist to my team. She said my heart is stiff and beats hard and when the valve closes to push blood out of the heart it doesn't empty completely and so blood sort of backwashes into the heart. She changed my blood pressure medicines and that helped with the shortness of breath. I also sweat profusely when I do any exertion. You ahould see me after I vacuum the living room! I have a followup with the cardio doc next week. With all of these crazy hot days I am having more shortness of breath for some reason.

I think it is wise to ask your doctor to order lung function testing, but it wouldn't hurt to have an echo done of your heart. Sometimes shortness of breath is more related to the heart than the lungs.

Good luck

Karen

[iraisin]

Hi CMNK12,

I'm getting educated on this by these wise women just like you, but I just wanted to send you a note of support with your issues. I sure hope you get the right answers from the right doctor with the right treatment.

God bless you.

[CMNK12]

Thanks so much for all of the thoughtful replies. God bless each of you. CK

[bella2]

Hi,
I was just diagnosed with SJS and Reynauds in April and Fibromyalgia in June.  I began to have shortness of breath in February.  I had no idea what was wrong.  I've also had chest pains off and on for the last 2-3 years and have had numerous EKG's.  I went to my MD and he took a chest x-ray and said it looked good and then made me blow into one of those things that measures your lung capacity (I think)...not sure what it's called and it was a little low.  He didn't know what to make of it.  Thought it might be from anxiety, so I got a prescription for xanax, which I never took.  I still don't know what causes the shortness of breath.  Mine has gotten better recently, but sometimes I lose my breath just walking up a flight of stairs or pushing the trash cans to the top of the driveway.  The 2nd rheumy I went to said she thought the chest pain was caused by the Fibromyalgia, but still no answer for the shortness of breath. 

Good luck to you and I hope it gets better soon.  It's very discomforting and I sure do hope you find some answers.  Please keep me posted on what you learn about this.

Take care,
Bella

[CAT1962]

I have had shortness of breath/ trouble catching my brest for about 5 weeks now. I just attributed it to anxiety ...not sure what about unless finances...lol  ...maybe I need to schedule an early appt with my pulmonologist.